Rachel

I'll order the shampoo and try it first. Thanks for sharing this information.

Why is it that some doctos say that you do not have an active virus because the IgM is in range? If you have high IgG values are the viruses still active? Is there research that explains this? If so, please pass on the research. I need to understand why a patient needs to be treated for them. The viruses listed in the topic tags are viruses that my son had high IgG levels. I am confused by this issue and need to be educated.

Did you see the video on PANS from the AE website? A Standford doctor talked about their current PANS program. It's the 6th video down in " Under our blog". https://aealliance.org/

Thanks for sharing the supplements. I'm doing some research. I have started my son on Monolarin. He is 14 and tends to pick up the viruses easily since hospital stays. He is also taking zinc and Vitamin C supplements. I have to be careful and watch his blood pressures with certain suplements. I use fresh garlic and other herbs in recipes. He has been checked for viruses and shows the antibodies from the past exposures. My goal is to try and find something that will help keep these at bay. When he comes home from hospital treatments, something usually shows up within the next 10 days. Like a runny nose or sore throat. Is there a supplement that works better on the respitory viruses?

It's good to hear that your son is doing better. I'm so new at this, I don't know what testing to recommend. My son had immune testing which indicated a problem with low t helper cells. They would not come out to fight infections. The Cunningham Panel was our next big clue. My son has been checked for virus and he did have results that indicated high antibodies from past infections but no active infections. My son's symptoms sky rocketed after he had the flu in 2013. So viruses, flu, and past infections do not help this strange illness. My son has been checked for lyme and co infections. I would encourage you to watch the PANS video from the AE allience. Some of the children that Standford was treating also showed up with other autoimmune antibodies in their bodies. There was a list and this caught my attention. It was towards the end of the video. Here is the link for those video's from AE. https://aealliance.org/ .

I found a Senate Hearing on Lyme done back in 2012. I know that many have stated that treatment seems to be hard to get through your regular insurance. I don't know if any of this information could help anyone but there are several articles included to support that lyme is autoimmune in the Dr. Katz transcript. This transcript is second one down under the third panel. This doctor talks about methods of testing and treatment that is needed to treat Lyme. http://www.help.senate.gov/hearings/hearing/?id=53342b1c-5056-9502-5d05-aa0c57233aed

I know these medications are used to modulate the immune system. Our doctor has mentioned that my son may need one of these later on. What is the difference between them? Will either one of them upset a vocal tic? What symptoms do these medications tend to help the most?

It is my understanding that these autoimmune antibodies can be caused by infections or viruses. As far as treatment goes I understand that it can take more than one treatment to get the antibodies under control or gone completely. I am just beginning this journey with my son. Maybe someone with more experience in this area can shed some light.

Can you share the name of the blood autoantibody that affects the platelet count? I did watch several of those videos. The information given in the PANS video was very interesting. The doctors found other autoimmune antibodies in some of those kids. Sure hope they are keeping track of those kids that come into the clinic and start sharing their research with other doctors.

Found a good resources on Autoimmune Encephalities. It even mentions PANDAS. Thought it might be worth sharing. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2034.ashx

After reading this old post, I wanted to bring it up again. Is anyone still using GABA? I have gradually been increasing my son's over the last several months. He has only been taking this at night. It just made him too sleepy in the daytime. He is taking 500mgs at night only. He is smiling more and will even laugh occasionally. I also increased his P5P dosage a couple of weeks ago. I'm thinking this is a good combination for him right now but I will be watching him closely. GABA seems to be helping with the addition of the P5P supplement. Edit: I found a blog by a natural path on GABA and found some interesting information. http://www.vitalityandwellness.com.au/health-blog/low-gaba-levels-increase-gaba-naturally

Hi Nancy, I have been doing some research on autoimmune movement disorders. I know tht high levels of D1, D2, and Cam Kinese are part of this problem. I have also found out that L-Theanine, fish oil, and Phoshatidylserine can increase Dopamine levels. However, I ran across an article that suggest certain herbs that will raise serotinon levels but lower dopamine levels. I stay away from herbs because they seem to lower my son's blood pressures too much. So I just can't take chances here because I have had a few bad experiences in this area. A year ago I started keeping a supplement Journal. I write down any supplement or vitamins, or medications that I start and list any side affects. I went back to check the journal. I had already tried the Tumeric and had to stop it after three days because it made my son's vocal tics go wild. Here is the article. Hope it helps. http://serotonintimes.com/2013/03/29/herbs-that-lower-dopamine-levels/

I don't know if your state offers K-12 virtural online school. In Oklahoma it is offered as a public or priviate school. The public school is free and both of my son's have done very well. They have passed all state testing since they have been enrolled. We have used this system the last 2 years. This last year, the school sent out someone to give the state test to my youngest son due to his medical condition. This school has worked very well with us and they individualize a learning plan for the student. They work with IEPS and 504 plans.

Does your daughter have any tics? Steriods can make this condition worse. My son has vocal tics and he can do steroids for about 5 days and then his tics will get worse. So for that reason, our doctor does not use the steroids unless his chest becomes inflammed with an infection or virus. This has been our experience with steroids.

You guys never cease to amaze me. I always thought OCD was severe unusual behaviors but I am beginning to see some I guess mild OCD things in my son. Like having a hard time making a decision, wanting things to be extremely organized, a voice that fads in and out, words with the wrong sound, but these things have just gradually started happening in the last 3 to 4 years. I never saw this change overnight.

Sorry Nancy. I thought you wanted to increase the levels. There are some foods that will raise dopamine levels. You might try avoiding them and see it that makes a difference. I can't remember all of them but the list is online

Hi Nancy, I was looking up Turmeric Curcumin and came across and interesting research article. This herb can increase serotinon and dopamine levels in the brain. It also helps with inflammation. I started using this a few days ago because I was having painful and stiff joints. It has actually helped with the pain. So I looked it up to see what else it would affect because I'm thinking about trying it with my own son. I am taking Whole Herb Turmeric Curcumin 500mg Spring Valley brand. I know there are better brands out there but I just wanted to see if it would help. Here is the research article. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2929771/

I'll check these out. Thanks for the information.

My son has vocal tics but he has not been diagnosied with TS. Whenever he washes his hair, his vocal tics increase for the rest of the day. The next day his vocal tic is almost silent. He does take Intuniv but on days when he washes his hair, this medication does keep his vocal tic under control. So I assume that the act of washing his hair is a trigger. Is there anyway to bring this trigger under control? Could this have anything to do with his shampoo or an ingredient in the shampoo? Any ideas?

All I can tell you is to hang in there. I am not seeing any improvements with my son but he is not declining either. All he can handle is a LD IVIG. I wonder about an underlying infection but there is no sign of infection, lyme, or coinfections. Has your son been sick for a long time? I know that my son has and I'm wondering it that makes a difference with how long it takes for treatment to start working. It's been helpful to read up on some past post to understand IVIG and PEX. Has your doctor mentioned PEX? This treatment can help if infections are out and you are just dealing with an autoimmune situation. At least this is what I am understanding from old post on PEX. My son drinks 72 ounces of water every day plus milk and gatorade. With treatments, he also gets saline but still breaks out in rashes afterwards. Hydration is important to the body before and after treatments. All I can tell you is to keep your chin up and keep marching ahead with treatment. Glad to hear that your oldest son is doing well and in college. That is encouraging news.

I found an article by St. Jude Children's Research Hospital that talks about this gene and there is an enyzme test that also checks for drug response. This gene showed up on my son's Detox Profile. However, I am confused because this article does not mention the varations of this gene but I am wondering if this is the reason why my son does not respond to pain medications. The gene CYP2D6 S486T showed +/+, CYP2D6 100>T +/- and CYP2D6 2850C>T was +/- on my son's Detox Profile. Could this mean that my son might have a problem with metabolizing certain medications? I have sent this information to my son's doctor but was wondering if anyone else was dealing with this possible problem. http://www.stjude.org/stjude/v/index.jsp?vgnextoid=4d00b53d06550310VgnVCM1000001e0215acRCRD

Hi Nancy, Are talking about dopamine levels that are high on a neurotransmiters test or the Cunningham Panel? My son has both. He also has the methylation problem that you mentioned. I have slowy been adding the supplements to help with methylation. I will watch out for this problem. Wish I could be of more help but hopefully some more experienced people can share their experiences.

My son has been having a rough time with viruses the last several months. I know there are many herbal and natural supplements that can help keep this under control. He does take vitamin C with rose hips and a citrus bioflavonoid complex and L-lysine 1000mg. I was wondering if there was just something better that I could give that would provide a better defense against viruses. For some reason his body picks them up very easily. He has been in and out of the hospital for IVIG treatments which does not help this. Within a week to 10 days after being in the hospital, he seems to come down with a virus. My son just had his 3rd LD IVIG treatment and has a runny nose. Any suggestions on supplements?

My son did not recieve either one. Our doctor suggested to wait awhile since he is doing IVIG treatments monthly.

My son has never had swollen joints or lymph nodes. His pain is all over and gets worse on damp rainy days. It reminds me of arthritis or neuropathy pain. This last type of pain is common with POTS patients His C3 was 146 and range was 73-183. This was a very interesting article. Thanks for sharing. Our test results were not ran through Jewish Labs but I am satisfied with these results for right now. If things get worse, I will get them reran through this other lab.